Antisynthetase Syndrome: Anyone else?

Posted by nancykay1888 @nancykay1888, Feb 12, 2020

My husband was diagnosed with this autoimmune syndrome in 2017 after spending 4-1/2 months in the hospital (59 in ICU). Normally it affects women with one in 100,000 people. It has affected his pulmonary system, muscles, blood, skin and you never know when something will pop up. He has wonderful doctors who watch him very carefully. Has anyone else ever encountered this syndrome or heard of anyone with it?

Hello @nancykay1888, Welcome to Mayo Clinic Connect. I did a search of Connect and was not able to find any discussions on Antisynthetase Syndrome. It must be difficult for you that your husband has such a rare disorder. It's great to hear that he has a good group of doctors who care for him. Have his doctors done any treatments or therapies that help his symptoms?

I was not aware of the Antisynthetase Syndrome and had to look it up. I found some good information describing the condition on the National Organization for Rare Disorders website — https://rarediseases.org/rare-diseases/antisynthetase-syndrome/

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Hello @nancykay1888, I would also like to welcome you to Connect. I am sorry to hear about your husband's rare disorder. I read the link that @johnbishop provided in his post to you. This must have been very difficult for his doctors to diagnose.

If you are comfortable sharing more, what type of symptoms was your husband experiencing when he was in the hospital? I'm also wondering what type of specialist made this diagnosis.

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Hello I am 27 years old and I was diagnosed with antisynthetase syndrome in nov. 2019 I have been searching all over for answer and other with conditions like me. It has affects my lungs muscles and joints. Your right this condition normally affects woman and usually older woman. I was also diagnosed with other conditions also with is that my doctor has told me has never been reported in combination with jo-1+ people and told me to report to Mayo Clinic’s which is what has brought me here… I am young and trying to find answers in any way that I can, I would be willing to share things about myself and any info I have received to possibly be of some help to your husband and anyone else reading this with this condition and I’d love input from anyone else l… it’s so hard to find answers.

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@jamieray6812

Hello I am 27 years old and I was diagnosed with antisynthetase syndrome in nov. 2019 I have been searching all over for answer and other with conditions like me. It has affects my lungs muscles and joints. Your right this condition normally affects woman and usually older woman. I was also diagnosed with other conditions also with is that my doctor has told me has never been reported in combination with jo-1+ people and told me to report to Mayo Clinic’s which is what has brought me here… I am young and trying to find answers in any way that I can, I would be willing to share things about myself and any info I have received to possibly be of some help to your husband and anyone else reading this with this condition and I’d love input from anyone else l… it’s so hard to find answers.

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Hello @jamieray6812, I know it must really be difficult trying to find answers when you have such a rare disorder like antisynthetase syndrome. Along with the reference link above for the condition on the National Organization for Rare Disorders website, The Myositis Association website has information that you might find helpful.

– Antisynthetase Syndrome: https://www.myositis.org/about-myositis/complications/antisynthetase-syndrome/

If I understood your post, your doctors mentioned going to Mayo Clinic after you were diagnosed with antisynthetase syndrome. Have you setup an appointment with Mayo?

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@johnbishop

Hello @jamieray6812, I know it must really be difficult trying to find answers when you have such a rare disorder like antisynthetase syndrome. Along with the reference link above for the condition on the National Organization for Rare Disorders website, The Myositis Association website has information that you might find helpful.

– Antisynthetase Syndrome: https://www.myositis.org/about-myositis/complications/antisynthetase-syndrome/

If I understood your post, your doctors mentioned going to Mayo Clinic after you were diagnosed with antisynthetase syndrome. Have you setup an appointment with Mayo?

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Thank you! I set up a phone appointment today with Mayo Clinic

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Hello my sister now 55 was diagnosed with anti synthetase syndrome when she was 47 . She has the jo-1 and mostly had pulmonary issues . Was on cellcept and prograf , IVIG and retuxin helped somewhat to keep fibrosis from progressing for awhile Unfortunately she did get covid and it made things worse ! She was in the hospital for 3 months and we just got her home now but she is on 5 l of oxygen and most likely heading in direction of needing new lungs ( getting on list ) all very hard to watch and when you don’t have Dr that have a full understanding of the disease it makes it harder !! My sister only deals with a pulmonologist at MT Sinai hospital ! While in the hospital infection control Dr took over because of covid and they just do not understand her disease and she still in 155 days is testing positive
Had to come off meds to build up her immune system again to get the covid out inorder to get on the list for a lung transplant ..

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@tstefanelli, welcome. Clearly, you are worried about your sister. She has been through so much and is still struggling with COVID infection as well as antisynthetase syndrome. I'm hopeful that @jamieray6812 and @nancykay1888 will return to share more with you.

In the meantime, you may wish to connect with others in the Transplants group in these discussions
– Lung transplants and wait times: https://connect.mayoclinic.org/discussion/lung-transplants/
– What can I Expect for my Lung Transplant Review?: https://connect.mayoclinic.org/discussion/lung-transplant/

It sounds like she needs the care of a multidisciplinary team. Might going to a large teaching hospital that has expertise in post-COVID, transplant and autoimmune diseases be a possibility for your sister? Are you able to visit her?

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Hi, my name is Nancy and my husband, Don, in 2017 was diagnosed with antisynthetase syndrome. How is your sister doing? I know that this is a terrible time for you with her having a double wammy. My husband's lungs were affected and everything was touch and go. He was in Christ Hospital, Cincinnati for 4-1/2 months. He is so o o o much better. We have been very careful this past year and we are very fortunate that we haven't gotten Covid (both of us have the shots). Please let me know if I can help you in any way. I can offer prayers for your sister if that's all right.

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@colleenyoung

@tstefanelli, welcome. Clearly, you are worried about your sister. She has been through so much and is still struggling with COVID infection as well as antisynthetase syndrome. I'm hopeful that @jamieray6812 and @nancykay1888 will return to share more with you.

In the meantime, you may wish to connect with others in the Transplants group in these discussions
– Lung transplants and wait times: https://connect.mayoclinic.org/discussion/lung-transplants/
– What can I Expect for my Lung Transplant Review?: https://connect.mayoclinic.org/discussion/lung-transplant/

It sounds like she needs the care of a multidisciplinary team. Might going to a large teaching hospital that has expertise in post-COVID, transplant and autoimmune diseases be a possibility for your sister? Are you able to visit her?

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Yes she is home so I am able to help her and be with her ! She is starting the paperwork with
NewYork-Presbyterian Columbia University Hospital for the lung transplant .

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@tstefanelli

Yes she is home so I am able to help her and be with her ! She is starting the paperwork with
NewYork-Presbyterian Columbia University Hospital for the lung transplant .

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Is the Covid under control? The doctors talked about Don having a lung transplant but he went down hill too quick. They said he'd never survive a lung transplant because of how fast his lungs were deteriorating. I know things change and every person is different, I certainly wish her well. If you don't mind telling me how old is she, Don was 65?

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@johnbishop

Hello @nancykay1888, Welcome to Mayo Clinic Connect. I did a search of Connect and was not able to find any discussions on Antisynthetase Syndrome. It must be difficult for you that your husband has such a rare disorder. It's great to hear that he has a good group of doctors who care for him. Have his doctors done any treatments or therapies that help his symptoms?

I was not aware of the Antisynthetase Syndrome and had to look it up. I found some good information describing the condition on the National Organization for Rare Disorders website — https://rarediseases.org/rare-diseases/antisynthetase-syndrome/

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Yes, his doctors are "miracle workers." They constantly monitor him and he has had all kinds of therapy. He was in a medical induced coma for over three weeks while the doctors worked with trying to diagnose what he did have. Dr. Jivan and Dr. Dama from Christ finally diagnosed him. After they brought him out of the coma (he was on a ventilator for more than three weeks and then they performed a trake (sorry about my spelling). He had to learn to do everything again and of course that took at least two years of therapy for different functions. There is so much I could tell you about those days but it's hard to put all the memories here.

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@hopeful33250

Hello @nancykay1888, I would also like to welcome you to Connect. I am sorry to hear about your husband's rare disorder. I read the link that @johnbishop provided in his post to you. This must have been very difficult for his doctors to diagnose.

If you are comfortable sharing more, what type of symptoms was your husband experiencing when he was in the hospital? I'm also wondering what type of specialist made this diagnosis.

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First off, I apologize for not receiving these emails earlier. I would love to share everything that I remember and how it started (problem started before we were aware). It is heretitary but with Don we have no idea where it came from. His father's background is not known. The specialist who made the diagnoses were both pneumonary doctors from India. One of the doctors had experienced or knew about the syndrome. We also had a doctor for infectious diseases, plus I believe two or three more. You can always call me and I can answer as many questions as possible. After Don's lungs were affected his muscles were affected a year later.

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